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About this blog

The thing about cancer is immediately when you hear it, you automatically connect it to the word “death”.  

  • Patient Name: Darren
  • Cancer Type: Acute Myeloid Leukaemia
  • Age when diagnosed: 11

Cancer treatment

16th June 2018

What next?

So now that I’d been told of the dilemma, I set about figuring out how I would treat it. Well I say ‘I’, but it became clear from the start that my input more or less involved trying to eat as much as I could (I lost my appetite pretty quickly), collecting up the bits of hair that fell out (and, I admit, pulled out on occasion – I thought it was hilarious upsetting my mum by doing it) and downing various liquid medicines.

Apart from one that is, a tablet by the name of Atra. Now apologies if that isn’t the correct way to spell it (I’m sure any medical professionals reading this would be enraged) but to be blunt I couldn’t give a dog’s doodah – an expression lessened for our younger viewers. And the reason for this was due to it being absolutely, monumentally, lip smackingly vile. Now I know I didn’t do myself any favours. I gagged every time I tried to have tablets, which left me with two options, to have it in liquid form or to crunch.

And boy did I crunch, and chew, and grind, and then crunch some more. Atra ended up being the devil’s Kinder Egg – it had a lovely surprise within it (!). No toy but what tasted like motor oil. It was all gloopy and sticky and would stay on your teeth for days. Of course the adults in the room were ever helpful and said: “Well if you just swallowed it whole, then it wouldn’t taste so bad”.

My dear readers, there is no situation where that is an acceptable answer to anything (or so I have heard). What was funny was that this was part of my first round of treatment.

green bag

 Machines and Hickman Line

What delicacies did I have coming up, I wondered? Sure, I could deal with being hooked up to machines and being fed drugs directly through the Hickman Line in my chest but even that had its drawbacks. For one thing, it created a weird taste in my mouth, as if I was swallowing the drugs myself. It also meant that some days I was limited to staying in bed or moving the trolley to wherever a power source might be (not the school room… never the school room).

Boredom soon set in and that wasn’t due to there being not enough to do. On the contrary, there were more than enough places I could go within the children’s ward to pass the time. The problem was when, as previous pictures have shown, you have lost a lot of weight and feel a bit sorry for yourself you don’t really have the energy to do anything.

Looking back, I should have spent more time out of bed and not wasted it staring at the digital display telling me how long the drugs would take to finish. I think it did centre around me being a bit embarrassed over my appearance and, even though there was many children looking the same as me, my bed became a safe haven.

Image: This was my old saddle bag for the Hickman Line tubes

 No hair and looking so thin

I remember the first time seeing my reflection in a television screen. My face really pale, no hair on my head and looking so thin. I think that moment had a big impact on things – I didn’t like what I looked like, so why would I move away from the sanctuary of my bed and parade myself down the corridors? I have already mentioned that most of the chemo was given to me via my Hickman line. This was a tube that was fed directly into my chest and on the other end had three connections that could then be linked to various drugs.

It was a speedier way to get what I needed in me and also worked the other way, allowing the nurses to take blood and without constant needles jabbing into my hands, arms, or (on one occasion when they couldn’t find a working vein) my feet! The operation to insert the Hickman line didn’t go smoothly and, long story short, I was rushed to another hospital where I was very poorly and had to have a chest drain.

But with anything to do with me there is always a funny side. For example, my poor dad nearly got chucked out by security when they found this strange man trying to get some sleep in an unused ward while he waited for his son to come round. Also, when I did awake, being too embarrassed to call out across the ward to a nurse when I desperately needed a pee because I didn’t want to wake the other very young children that were there. So I took a very English response to the situation by coughing at various intervals. The poor lady didn’t notice so I was left to very meekly call out “could I have a bottle please?” She was lovely though, and, even though I was still unwell, a bit groggy and with various wires connected to me, she understood my insistence as a young man that I could do it myself.

After that adventure and carrying the three ends of the Hickman line in a little saddle bag around my neck, I returned to the Marsden. Over the course of the next few months that line was used constantly, backwards and forwards. It became a part of me and I still wear the scar of where it used to be. At times I give that scar a little rub and remember what it felt like to have the tube beneath my skin. That isn’t as gory as it sounds – it was a very faithful friend that ultimately worked tirelessly so I could be typing this now. I am very thankful for that.

This article was produced by with permission from author [Darren] 16.05.17

Want to share your story? Please email mystory@childrenwithcancer.org.uk